Content warning: description of the widespread impact of changes in health with specific mention of the risk of suicide.
Welcome back to Not a Low Intensity Guru for 2020. It’s been a few weeks since my last post thanks to flu and the winter holiday season, and my reluctance to end a social media break (highly recommend that if you’ve never done it!). I also became an aunty for the first time and got very distracted by the baby. If you’re still reading, thank you and hiya!
My plan for 2020 is to write when I can, but aiming for monthly posts. I’m hoping that less frequent posts will mean I use some of the time to edit myself (no more 3000 word beasts is one of my new year’s resolutions!), and that it will leave more room for guest posts by other Low Intensity Therapists (hint hint).
Today’s blog is about fatigue and continues the series that I started in November about low Intensity work with Long Term Health Conditions (LTC). I’ll be drawing on my own experience of Chronic Fatigue Syndrome/ME (CFS/ME); there’s no point in ignoring 23 years of lived experience for the sake of some sort of pretentious pseudo professionalism, she tells herself… We’ll see how it goes.
Many patient support and advocacy groups are understandably wary/blindingly angry at any suggestion that talking therapy will cure CFS/ME. I can’t emphasise strongly enough that IT CAN’T
I thought I’d try to capture a bit of what living with CFS/ME is like, and touch on how this fits with Low Intensity work in IAPT, but mostly this is about trying to describe the condition and then you can draw your own conclusions about our work from there. Risk as going to feature because I haven’t covered that in an LTC post yet; and you can’t talk about CBT based interventions related to CFS/ME without talking about the PACE trial *shudders*.
Not to be dramatic but
The experience of CFS/ME is difficult to describe. I’ve tried a few times and the closest I can get is to ask people to think about when they’ve had flu, then think about how wiped out you were for a few weeks after. Now imagine being that wiped out for months and years at a time. That’s the closest I can get, and it’s utterly inadequate. Like most unwanted changes in health CFS/ME is a hideous and disabling illness that can have a devastating impact on every part of your life. I have described it as being wrapped in chains in a dark dungeon. Some of the people who have accessed our team with fatigue use similar language – chains, darkness, heavy weight.
Who you are doesn’t change; you think and emote, have the same hopes and ambitions, and look as if you are well, but the ability of your body to express the activity in your mind and emotions is gone. Fatigue and other symptoms of the condition affect every choice you make every day. When the symptoms are bad you feel like a conscious puppet with the strings cut. Your body makes you powerless and you’re inside it, observing, grieving and raging; all very restful stuff.
The last time I stood in a queue at a bank I was in the middle of a fatigue flare up and I remember vividly how upset I was that I wasn’t able to smile at the other people in the queue, and my ‘hello’ to the customer service representative was quiet and abrupt. I stumbled over a simple request because the brain fog made word finding very difficult. I was raging at myself because I knew how grumpy and bad tempered my face and voice must have seemed; that wasn’t how I felt, I was excited and happy to be out of the house, seeing people and doing something productive. The energy just wasn’t in my body to produce the usual response and signals that would naturally flow in a social situation.
The Low Intensity Therapists in my team have commented that working with people who have got CFS/ME can be challenging because the non-verbal signals from a fatigued person can be very flat and discouraging. When your energy is low
- your voice becomes flat and quiet
- you say fewer words
- you stop smiling
- your gaze might rest on the floor
- your posture is likely to appear slumped or closed; unengaged.
Barriers to IAPT
This requires a big adjustment for the LIT who is working with a fatigued person. Low Intensity training places a lot of emphasis on “engagement”; a big part of the LIT job is getting someone on board with the ideas and changes that might help them, you do that by building trust and rapport. We count on being able to form good relationships quickly to do our work. If the signals from the other person make us think that they’re angry or bored, or disengaged, we get anxious or assume that what we can offer wont work for this person. Many LITs have a tendency to blame themselves if they don’t think things are going well; when things in a session don’t feel right they start to examine what they did wrong (in this case, nothing), and the work becomes more stressful.
Simple, practical and effective ideas delivered through empathetic and compassionate human contact – you can’t really go wrong with that can you?
Low intensity interventions are often exactly the right level of care for someone with fatigue. Bite size bits of practical information and support to make small but effective changes; we’ve got a lot to offer here. But if you aren’t aware that fatigue can impact on non-verbal communication in this way there is a risk that a patient might be denied a service because they aren’t giving enough in the session. We look for evidence of engagement with the treatment but someone with CFS/ME might not be able to show this in the same way. Some LITs might Step to a higher intensity of therapy unnecessarily (this usually means putting someone on a waiting list) if they can’t handle this aspect of the presentation.
The PACE trial. F—g hell… OK. The one time the UK funded a big randomised controlled trial into treatment for CFS/ME, we got the PACE trial. This single handedly made offering CBT based interventions to support people to live with this horrendous condition problematic, to put it lightly. This headline from The Telegraph says it all really. A post from ME action highlighted how problematic this and other headlines were. On a brighter note a browse around the Stanford ME/CFS Initiative website can be quite encouraging, and the ME Association have got a well-stocked research page.
We still see the fallout from the PACE trial. Many patient support and advocacy groups are understandably wary/blindingly angry at any suggestion that talking therapy will cure CFS/ME. I can’t emphasise strongly enough that IT CAN’T. What we can do is offer some help along part of someone’s journey with the condition.
Our local mantra is that we offer evidence-based treatments for depression and anxiety that we have learned to adapt to the needs of people who live with long term health conditions. We are not trying to cure a physical health condition with talking therapy.
I can’t, can you?
Think back to the Bio-Psycho-Social model and it’s obvious that people who experience CFS/ME are going to be at high risk of depression and anxiety. You’re locked away from a lot of previously valued activity, and your role in every relationship has to change. There’s also an urgent requirement to prioritise what you use your energy for, coupled with the unceasing and multi-directional demands of modern life. Trying to figure out how to prioritise well is the task of a lifetime.
When the symptoms are making themselves felt you find yourself saying ‘I can’t’ a lot: I’ve been to work but I’m sorry, I can’t meet you today. I did the laundry so I’m sorry, I can’t go out at the weekend, I can cook for my children; I’m sorry but that means that I can’t get into work, I can’t meet that deadline.
Or you say ‘Can you?’ too frequently: ‘Can you come over and cook the kids dinner, I can’t get off the settee’, ‘Can you give me a hand with the shopping?’ ‘Can you come to my house again? The journey to yours is too far.’ ‘Can you pick that job up for me, I’ve run out of steam’.
Asking for help is embarrassing, and it can provoke grief because it forces a confrontation with loss. What could be endless opportunities for connection and gratitude can quickly become shame and resentment. Being defeated by small daily tasks and obliged to feel constant gratitude can be nearly as exhausting as the fatigue when you resent and fear the symptoms that force you to ask for help.
I stay away from our work with Chronic fatigue as much as possible, for obvious reasons. But a few months ago I covered an IAPT low intensity psychoeducation group at our local chronic fatigue service. Before the session started the participants were talking over coffee. The impact of the condition on parenting was the topic, all of them had been robbed of the chance to parent their children in the way that they wanted to, and they all carried this living, ongoing grief every day. During the session we did a valued living exercise – the idea was for people to be able to identify areas of life that felt important so that these types of activity could be prioritised in a pacing and behavioural activation plan. The group looked at the sheet and every person in the room (there were five participants) started to cry.
There was no one on that course who hadn’t been forced to stop acting in a valued part of their life because of CFS/ME. They all wanted to work, but were unable to. They couldn’t parent in the way that they thought that they should, they had been forced to drop out of education, relied on care from their elderly parents instead of providing care, they had lost friendships, couldn’t participate in spiritual and faith based activities or communities in the way that they wanted to… the account of deep loss and anger went on and on. We hadn’t got a solution to offer, we just had to hold the space, acknowledge the loss, anger, fear and grief, and re-wrote our valued living worksheet to soften the stark descriptions of inaccessible parts of life.
The risk of suicide and self harm and neglect is higher whenever a long term physical health condition is present with depression and anxiety. I’m giving a specific example from fatigue here but a lot of what we have to consider with one health condition crosses over to others. I was trying to think how to describe the way that suicide can feel like a more and more rational response to this condition when the internet came to my rescue. Here’s a post from a Redditor who chose to use an anonymous account to post on R/SuicideWatch five years ago. This is difficult but important reading. As IAPT workers the best we can do is to be aware of this, never get sloppy with risk assessment, and never underestimate how severely a fluctuation in physical symptoms can impact on someone’s mood and hope.
Like most LTCs CFS/ME can follow a pattern of relapse and recovery – if you’re lucky there can be long periods of time where the symptoms are less severe; you are never able to forget about the condition but you can live a version of your life that isn’t too far off what you’d live if you were well. It can get bad again at the drop of a hat though. I read somewhere that most people with CFS will have a major relapse every 4-5 years. If you’re very lucky that could be maybe three years of living a pretty normal life and feeling OK, as long as you’re sensible. Then it’s back, and suddenly having a shower in the morning might be too ambitious.
Getting better from a relapse is like climbing a scree slope. It’s possible to make progress but you have to think carefully about every foot placement, and gauge how you use your weight. Every step forwards is likely to be followed by a slide back, and the risk of ending up scraped and bleeding and back at the bottom of the slope is high.
Asking for help is embarrassing, and it can provoke grief because it forces a confrontation with loss.
This is where we can think about specific LI interventions that can be applied.
- Sleep Hygiene and sleep retraining – with sensible adaptations around the need to rest in the day. You have to differentiate between tiredness (improves with sleep and rest) and fatigue (doesn’t improve with sleep) and recognise that sleep disruption is a symptoms of both CFS/ME and Depression.
- Relaxation skills. Can’t emphasise this enough. A life changing moment for me in my teens was when the respiratory ailments consultant who was treating my CFS/ME in the children’s hospital (long story) told me to lay down and do nothing for half an hour every day.
Teen Nag: What, not even read?
Harrased consultant: No, don’t read, sleep, listen to music, watch TV or talk to anyone. Just lay still, awake in the dark and quiet for half an hour every day.
Teen NaG: Get stuffed!
I can’t describe how much I hated the first few days but I gradually and completely accidentally learned how to relax in those half hours, and that turned the corner. It’s completely within the scope of the LIT to teach relaxation skills effectively and work them into a pacing or Behavioural Activation intervention.
- Pacing. Everyone should pace, with or without an LTC. Basically it’s about learning how to find the balance between activity and rest, based on the reality of what your body is capable of doing today, not on what you think it should be able to do. It’s frustrating as hell, and requires a certain level of acceptance, but is incredibly helpful if you want to be able to live with fatigue and still do things sometimes. Pacing is going to get it’s own blog post soonish.
- Behavioural Activation: as long as it’s properly adapted and supported with pacing, functional equivalence and valued living. You can’t tell someone with CFS/ME (or most health conditions) to just do more. You can’t. This is a whole other post as well.
The other stuff that a LIT can provide doesn’t really fit into an intervention box but is at least as important: The five areas can be an accessible way to make sense of the massive emotional impact of living with the condition. Some information on the processes of acceptance and grief (not basing whole sessions on this obviously!) and why they’re normal with the condition can be helpful and therapeutic. Simple, practical and effective ideas delivered through empathetic and compassionate human contact – you can’t really go wrong with that can you?
This post has been a whirlwind tour of a big subject, I hope there’s something useful here, I left a lot out. As always, please let me know what you think. If there’s a topic that you want to see on the blog – especially if you want to argue with me, lets get a variety of perspectives out there! – then I’d love to support you to write it 😀